Emily was born in 2011 with the known challenge of a congenital heart defect, for which she endured open heart surgery as an infant and faces more at an older age. As she has grown, we have had to help her with reaching her milestones in walking and talking. As she continuously fell behind her peers, we were left scratching our heads and seeing new specialists, until finally visiting a geneticist. The diagnosis is more devastating than we could have imagined: Sanfilippo type A.
It’s so new, and we are still stunned, yet grateful to have found out there is a strong community behind these rare inherited diseases. They are pushing hard to get research and trials the funding needed to save these kids, and her family wants in! We want to help, and if creating this page to share and reach out to bring awareness and donations is part of that, we are here.
So, thanks for visiting my page and please join us with fundraising by contributing to this great cause.
Making a donation is easy and safe- simply click the “Donate Online” button in the upper right to donate.
Make sure to bookmark this page and come back often to check on my progress!
The mission of the National MPS Society is to fund research and provide support for families affected by MPS and related diseases.
Please help our family and support the National MPS Society. Every donation will make a difference in the lives of those affected by MPS and related diseases. Please visit www.mpssociety.org for more information.